OP0041-PARE SJÖGREN EUROPE: REVIEW OF ITS FIRST THREE YEARS OF ACTIVITY
Authors: A. Grosjean, L. Stone, C. Bouillot, A. Vieira, K. Antonopoulou, J. Koelewijn-Tukker, M. Oosterbaan
Journal: Annals of the Rheumatic Diseases (2022)

Background Sjögren Europe was founded on 23 February 2019 by several European patient organisations representing Sjögren’s patient to help to address the lack of visibility, attention, and solutions for Sjögren’s. Objectives To show the first achievements and contributions of the federation. Methods Sjögren Europe’s purpose is to promote the advancement of knowledge, research, information, treatment, and care, to foster patient involvement and participation in research and any other relevant area, to increase awareness, identify the different unmet needs and articulate patient voices throughout Europe. Results Finding one’s bearings and the right rhythm during the first years of an organisation’s life is a challenge in itself. The Covid-19 pandemic has made this process even more difficult. Our first goal was to organise a first face-to-face European patient conference. This meeting had to be postponed. However, we were able to adapt and develop a range of activities. We organised a series of informative webinars on different topics by leading European experts for patients and others interested in the subject. We have organised various awareness campaigns such as a campaign for Sjögren Awareness Month in 2021 for which we have created 2 awareness videos and published several testimonials. We also created a 3-axis campaign about fatigue for World Sjögren’s Day 2021 which won the Best Practice Award at the 2021 PARE Conference, and during which we shared the patients’ perspective on fatigue in publications in 13 languages on social media. We published a booklet about fatigue developed by a specialist and produced 3 informative leaflets for patients. We also subtitled 2 videos made by one of our members in 10 European languages to disseminate quality information that many patients miss. We have been involved in various research projects, working groups and patient panels and have been able to bring the patient perspective to various stakeholders on many occasions. Conclusion Despite the limited contacts, we were able to create strong links and rich discussions that stimulated our creativity. Sjögren Europe has become a privileged partner, recognised, and appreciated by the various stakeholders. Patients with Sjögren’s are better represented at the supranational level. It is our members, the national patient organisations, who by their trust give us our legitimacy. In return, Sjögren Europe has been able to inject a new energy and dynamism that can be felt at the different national levels and that opens up many perspectives and opportunities. We have been able to strengthen our presence and visibility with patients on social networks, where our audience is constantly growing, as well as in the rheumatology field with researchers, clinicians, industry, and associations such as EULAR. The resumption of face-to-face contacts is eagerly awaited to consolidate the links already created and to feed the richness, relevance, originality and diversity of our discussions and activities. Disclosure of Interests None declared.